From telling to sharing to silence: A longitudinal ethnography of professional‐patient communication about oral chemotherapy for colorectal cancer

Abstract

Background: Healthcare professionals are encouraged to promote concordance, a shared agreement about prescription and administration of medications, in their communication with patients. However, there is a paucity of research regarding the impact of communication about self-administered oral chemotherapy. The aim of this study was to examine the changing dynamics of communication through the patient journey from diagnosis of colorectal cancer to posttreatment of chemotherapy.Methods: Over 60 hours of observational data were digitally recorded from interactions between 15 healthcare professionals, eight patients with colorectal cancer prescribed capecitabine, and 11 family members over a 6-month period in outpatient departments within one hospital in the United Kingdom. Sixteen semi-structured interviews were conducted with patients during and after their treatment. Three focus groups were carried out with healthcare professionals. These data were analysed using thematic analysis.Results: The patient journey followed a path of four distinct phases: autocracy, physiological concordance, holistic concordance, and silence. Initially, communication was medicalised with patients occupying a passive role. As patients continued their journey, they took a more active role in their treatment discussion by leading consultations and sharing their priorities of care. At the end of treatment, patients felt isolated and unsupported when they were discharged from their oncology team.Conclusions: Communication about oral chemotherapy is not a static process; it evolves to take account of changing clinical requirements and growing patient confidence in dealing with their cancer. Different stages in the treatment journey indicate the need for different approaches to communication. KEYWORDS cancer, colorectal cancer, communication, ethnography, oncology, oral chemotherapy, patient education, patient experience, patient safety 1 | BACKGROUNDCancer is one of the leading causes of morbidity and mortality with more than 15 million new diagnoses each year. 1 Colorectal cancer is the third most common form of cancer, and its global burden is expected to increase by 60% to more than 2.2 million new cases and 1.1 million deaths by 2030. 2 Presently, the most common ways to treat colorectal cancer are surgery, radiotherapy, targeted therapy, chemotherapy, or a combination of these. 3 Over the past decade, administration of chemotherapy has changed with a growing number

What Do Patients and Their Carers Do to Support the Safety of Cancer Treatment and Care? A Scoping Review

“…Of all sixteen studies, eleven sampled patients, 4 , 11 , 13 , 20 , 24 – 26 , 28 , 30 – 32 eight sampled carers, 21 , 23 , 25 – 27 , 29 – 31 and five sampled HCPs. 4 , 23 , 25 , 26 , 31 All studies that sampled carers were identified as members of the patient’s family and one included an unrelated friend.…”

“…Of all sixteen studies, eleven sampled patients, 4 , 11 , 13 , 20 , 24 – 26 , 28 , 30 – 32 eight sampled carers, 21 , 23 , 25 – 27 , 29 – 31 and five sampled HCPs. 4 , 23 , 25 , 26 , 31 All studies that sampled carers were identified as members of the patient’s family and one included an unrelated friend. 21 Of studies involving staff, three included oncologists, 4 , 22 , 26 three nurses, 4 , 22 , 26 one recruited general practitioners, 4 one sampled surgeons, 25 and one did not specify.…”

“… 4 , 23 , 25 , 26 , 31 All studies that sampled carers were identified as members of the patient’s family and one included an unrelated friend. 21 Of studies involving staff, three included oncologists, 4 , 22 , 26 three nurses, 4 , 22 , 26 one recruited general practitioners, 4 one sampled surgeons, 25 and one did not specify. 31 …”

“…9 This scaffolding role does not always seem to be equally distributed across all aspects of care, however. Despite some patients expressing a need for psychological support, 26,28,30 only one study reported on well-being services accessed by patients. 30 Studies with staff participants also did not find any mental health resources being accessed by or recommended to patients.…”

Enabling sustained communication with patients for safe and effective management of oral chemotherapy: A longitudinal ethnography

“…Current research on chronic disease management demonstrates the importance of concordance in patient‐healthcare professional communication (Hamann et al., 2014; Kehl et al., 2015; Mitchell et al., 2019; Siouta et al., 2016). Concordance involves patients and healthcare professionals having agreed decisions about treatment based on equal relationships (Mead & Bower, 2002; Mitchell, 2014; Royal Pharmaceutical Society, 2019).…”